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Thread: Anyone have the same lung problem?

  1. #21
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    Default Re: Anyone have the same lung problem?

    Sweet Lilly,
    Thanks for the update. Reading it made me feel like I am sitting right there with you in the room, rolling my eyes to your mom and holding myself not to get mad at the dr. I am glad you didnt give up and got the CT. Good luck with it. Please update us.

    I dont think that its wrong if we come to the dr. with info we read on the forum. The friends here have so much experience, much more then our docs have. I tell about the forum to my pulmy and wg dr. The first likes to hear about it. The second not so much but is still curious.
    We are not and should not be "dumb" patients who only waits for the dr's "wisdom" We also have our opinion and a decent dr. needs to listen and to consider it.

    Anyway, you are such a kind and pure soul, to be compassionate to the poor docs.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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  3. #22
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    Default Re: Anyone have the same lung problem?

    Quote Originally Posted by Alysia View Post
    Sweet Lilly,
    Thanks for the update. Reading it made me feel like I am sitting right there with you in the room, rolling my eyes to your mom and holding myself not to get mad at the dr. I am glad you didnt give up and got the CT. Good luck with it. Please update us.

    I dont think that its wrong if we come to the dr. with info we read on the forum. The friends here have so much experience, much more then our docs have. I tell about the forum to my pulmy and wg dr. The first likes to hear about it. The second not so much but is still curious.
    We are not and should not be "dumb" patients who only waits for the dr's "wisdom" We also have our opinion and a decent dr. needs to listen and to consider it.

    Anyway, you are such a kind and pure soul, to be compassionate to the poor docs.
    Hi Alysia, Thank you, and all of you other friends, who have responded with information, experience with what I am going through, and support. I am sorry its taken me so long to respond.....I feel like I am trying to dig myself out from under a mountain of paperwork!! I have 3 meds that THANKFULLY I am able to get for no cost. Each med is very expensive and I am very fortunate to be approved, but each has its own set of rules, and each year I re-enroll for each separately....I have to do all the legwork, phone calls, keeping folders for each one so I will not get confused. So I am basically "brain dead" at the moment!!! But, I had to check on my dear friends here.....So, I had the CT of my throat LAST Monday, Thursday the nurse called and told me it was negative...no narrowing. So that's good news. Today I am going back to the EENT for post CT follow up appt, so he can tell me he was correct! (I am praying that I will not go in with that kind of attitude) I feel like he just cannot understand what it is like to have a disease that causes issues with your body that cannot be medically explained, so you have to look at all possibilities. In the mean time, you suffer and are afraid. But today I am praying that I will have a positive attitude when I see him, and let God help me and guide me as me and the doctor discuss my issues. I Love you all, and will be in touch, and let yall know how things went. Blessings to you all.....Love Lilly
    Life is a Gift~ Lilly

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  5. #23
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    Default Re: Anyone have the same lung problem?

    Hi friends, thank you for all your support, information, and just being there for me.....So to follow up on my EENT appointment on Mon. Feb. 5th, where I was wanting to know if I may have tracheal stenosis.....and my doctor was very negative....(yall know the story,,,) So I was very apprehensive about my follow up visit yesterday Mon. Feb. 12. I already knew the CT of my throat was negative, the nurse called me and told me. So I prayed that God would just speak through me and I would not wear my feelings on my shoulder. Well, when he came in, he was his usual smiling pleasant self, and I said, "well, good news that the CT was negative...so I know that is not what is causing my issues". And he said, well...what do you think you will do now? And I told him that "I would just accept it for now, make any changes that cause it to become worse until I can find out what could be causing it. This is just part of the journey...."
    But before I left, I asked him to look into my right ear ( not the one with the tear in the eardrum) because for the last 5 days, each morning I would sit up and I felt fluid behind my eardrum. So when he looked, sure enough there was fluid. He put the options in my lap, did I want him to drain it and put a tube in? Or see what it does and come back in 5-6 weeks. I decided to get the fluid out, to reduce the chance of infection. I usually have this done in the office, so I got ready. I always close my eyes, and hold my hands together and hold as still as possible. He talked me through it, as always. This time was a little different when he was suctioning the fluid out....it was too thick to get out the regular way, so he said, "Ok, this is going to be VERY loud, like a strong wind blowing...." And he gently put it in 3 times....and, and each time I felt like the table was falling forward and I was going to slide right off the end!!! LOL. I guess the strong suction made me feel like that!! Crazy!!! So, when he was done, I asked him if he had any idea why the fluid was so thick? And he said, "Well, having wegeners for as long as you have, I imagine its part of the long term damage. But hopefully this tube will give you some better hearing for now. I'm here if you need me. Take care". So, I felt very relieved that he acknowledged my wegeners as an issue with my ears, and he has never done that before. I can hear out of my right ear much better, for now, and for that I am thankful. One day at a time.....Blessings to all of you my friends. I love yall....Lilly
    Life is a Gift~ Lilly

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